While the search for a DIPG cure continues, children with DIPG usually endure one experimental trial after another, usually suffering awful side-effects. Research is showing that single agent trials simply will NOT be curative in DIPG...multi agent and multi modes of therapy will be needed.
We are beginning now to see new developments and some combinational approaches using technologies that by-pass the blood brain barrier and deliver agents directly to the brain stem that are available on 'compassionate' grounds. Some are more well documented than others and there are fees for these treatments.
Unfortunately for families the costs can also be HUGE!...None of these experimental options are currently with any data driven 'approvals' that would allow their adoption within the NHS here in the UK, or make them available on insurance for overseas patients.
All consequently are currently found in private 'self-pay' clinic settings...these are the procedures that have the most interest and are more widely used by the DIPG community.
You will find family accounts of all these procedures if you follow any of the social media Facebook pages.